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Topic: shadow language (Read 1664 times) |
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andrewhurt
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shadow language
« on: Oct 10th, 2005, 1:14pm » |
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I'm getting ready to survey a group of 140 cluster headache people who were treated by my boss. I'd like to include a question about the "shadows." Though I've read several good descriptions, I'm still having a hard time understanding the experience (I'm not a clusterhead myself). I'd like to get a good enough grasp of the shadow to be able to write a question for someone who experiences this phenomenon, but who hasn't tried to verbalize it himself, and hasn't heard other people talk about. Is there any common element to the shadow that could be used to identify it, or is it such a strange experience that it's impossible to contain in words?
I would greatly appreciate it if a number of you would write a paragraph describing the shadow experience. What does it feel like? How do you know it is a "shadow" and not a headache? How do you know it is a shadow and not some other symptom of the headache? Does it change the way you think? Does it change your mood? Are there any distinct sensations that accompany it? Does it always precede a headache? Does it tell you what the ensuing headache is going to be like? Do you have shadows on a seasonal basis, a particular time of day, or outside your active cluster periods? These are just some of the questions on my mind. Please write whatever you think is most important about the shadow. Thanks in advance,
Andrew Hurt
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eyes_afire
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Re: shadow language
« Reply #1 on: Oct 10th, 2005, 1:50pm » |
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You'll probably get a wide range of answers. Probably what most clusterheads will agree on is that it feels like a pressure or fullness in the cluster area. I also throw in some other symptoms and consider them to be shadow activity... because they often foreshadow a full-blown CH. So for me, it is: the pressure, burning eye, extremely stuffy left nose, and eye twitch.
Quote:| How do you know it is a "shadow" and not a headache? |
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Because you're not yet praying for death or banging your head on a hard surface.
Quote:| How do you know it is a shadow and not some other symptom of the headache? |
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Not sure I understand what you mean. For me, I don't know... that's why I lump all the above symptoms together and call them shadows. I'm sure many will disagree with my definition but I just can't separate them.
Quote:| Does it change the way you think? Does it change your mood? |
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I get irritable and restless... knowing the doom to come.
Quote:| Are there any distinct sensations that accompany it? |
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Fear, if that's a sensation.
Quote:| Does it always precede a headache? |
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Usually, but a CH does not always follow.
Quote:| Does it tell you what the ensuing headache is going to be like? |
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Not really, but because it's CH, you know it's gonna be real bad.
Quote:| Do you have shadows on a seasonal basis |
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Nope, I can't detect any seasonality. In fact, I don't understand this preoccupation with seasonality (especially after looking at the CH survey).
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Yup, at the scheduled CH time.
Quote:| outside your active cluster periods |
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I have on occasion.
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kimmeesue
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Re: shadow language
« Reply #2 on: Oct 10th, 2005, 2:23pm » |
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First of all I am a chronic sufferrer which means, for me, that I have "symptoms" on an almost daily basis.
My shadows are a pressure behind my right eye. Sometimes the pressure is just noticable and others it builds to the level of being uncomfortable. If it continues to build to the point of pain rather than discomfort I know I am probably in for a hit.
The usual shadows don't really impact me in terms of thinking or mood but they do if they begin to grow. My husband says I have very specific body language and behavior. I know I feel anxiety, like being stuck on the tracks and waiting for the 5 o'clock train to come along. Powerless, I guess.
As the pressure builds the eye waters and the nostril becomes stuffed.
When it was episodic and seasonal I don't recall ever having the shadows outside of an active period.
Hope this helps you and your boss.
Kim
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yikes-another-one
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Re: shadow language
« Reply #3 on: Oct 10th, 2005, 3:38pm » |
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on Oct 10th, 2005, 1:14pm, andrewhurt wrote:
What does it feel like? How do you know it is a "shadow" and not a headache? How do you know it is a shadow and not some other symptom of the headache? Does it change the way you think? Does it change your mood? Does it always precede a headache? Does it tell you what the ensuing headache is going to be like? Do you have shadows on a seasonal basis, a particular time of day,...
Andrew Hurt |
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My "shadow" is a "pressure" that resides where the normal pain and pressure is for the headaches. There is no definitive way of knowing if it will just be bothersome, or develop into the severe headaches...but it is a "spot" and it reminds me that the pain could come back at any time. It can make me break a cold sweat, if it suddenly appears after a few days of no "activity" because then I remember that the pain can really hit at any mintue...at other times, the "shadow" is a welcome thing, after a long cycle, having only a shadow is a respite from the higher level pains... so in a way it can make me fearful or glad...
and you never can distinguish between the two.
i would say a shadow can be a blip on the pain scale,
and at times can range up to a level 2 or 3.. but the eyes does not water and the nose has no normal syptoms. It isn't something you can just ignore, because the pressure shuldn't be there, and it is right where the headache would be....so it is nerve wracking
trying to wait and see if it will stay or go or become worse...but then again, you don't really need to take the Zomig or imitrex, because it's not sooooo terrible
that you can't function around it...
When I wuz episodic, i could gte a shadow anytime any where...in cycle or out of it. Once i became chronic,
I have had daily shadows...some fade away in 20minutes ,some stay for 12 hours....so no idea what it all adds up to...just no fun at all.... 
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unsolved1
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You've had some very good descriptions of a 'shadow' so far. For me, a shadow is a cluster that never develops. Slight pain in the same exact 'spot' as where a full blown cluster starts. First thought is "Oh Sh*t, this could get bad, very bad". Most of the time, if it doesn't get bad within 5 minutes, it's not going to... but it can last for hours. Shadows can also come with other CH symptoms such as nasal congestion on the side which the pain is on.
Hope this helps some
UNsolved
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marlinsfan
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Re: shadow language
« Reply #5 on: Oct 10th, 2005, 4:41pm » |
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I am episodic, and my shadows only come when I'm in cycle, or during the 4 weeks +/- after the last full blown headache of the cycle.
A shadow to me is very mild pain in the same area where I get the massive clusterheadache pain. It's usually behind the temple, but it's not bad enough to reach the eye. My eye waters most of the time when I get a shadow, and sometimes, though not always, droops. My nose waters a tiny bit. Most times they develop into full blown headaches.
I know it's a shadow and not a HA because the pain level is much, much lower. Also, my shadows can last for hours, while my headaches only last 30-60 minutes if untreated (I always treat them, of course).
A shadow will change my behaviour in that most times a full blown headache will follow. So, when I have a shadow, all I focus on is trying to determine if it's going to stay a shadow or if the pain has the slightest inclination to get worse. Also, when I get a shadow, I will drink coffee as soon as I can, or a starbucks espresso shot in a can, or whatever caffeine I can get a hold of. During a shadow, I am 100% focused on getting caffeine, make sure I have trex handy if I'm not at home, or if I am at home, make sure my O2 bottle is ready to go.
Also, during my shadow, if I touch my temple I can really feel the blood pumping in the vein that's right there.
A shadow will not tell me anything about the duration or severity of the coming headache.
During the month or so at the end of my cycle when all I get is shadows, a shadow tells me that my cycle is not done. It tells me I can't drink a beer, or eat any of my triggers.
Hope this helps.
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Sandy_C
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Re: shadow language
« Reply #6 on: Oct 10th, 2005, 5:59pm » |
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I'm episodic. I will begin to "shadow" a couple of weeks before I go into a full episode of CH. A shadow, to me, is a feeling of pressure, but not pain, centered just above my right eye. Sometimes it will radiate out to my temple and above my right eyebrow, and my scalp on the right side of my head will tingle. These shadows let me know that I'm in for a cycle and I had better have my meds in order. During the cycle, I will also "shadow" just prior to my regular, like clockwork hits. If the shadow remains just a shadow, I might have a very mild hit, or no hit at all, which is lovely. If the shadow "grows" that's the only word that comes to mind, I run for the meds because I know the hit is coming and it won't be a very nice one.
In some ways, shadows to me are good because they are my warning signal. If I pay very close attention to my shadows, I usually know beforehand what I'm in for when the actual CH hits me.
Sandy
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Kevin_M
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Re: shadow language
« Reply #7 on: Oct 10th, 2005, 6:02pm » |
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on Oct 10th, 2005, 4:35pm, unsolved1 wrote:| You've had some very good descriptions of a 'shadow' so far. For me, a shadow is a cluster that never develops. Slight pain in the same exact 'spot' as where a full blown cluster starts. First thought is "Oh Sh*t, this could get bad, very bad". Most of the time, if it doesn't get bad within 5 minutes, it's not going to... |
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That about does it for me. When it feels like it might break through but it doesn't, during the daytime for me. Also happens at the end of cycle as I am cutting the verap dosage.
When they don't break through and want to linger as just a shadow, I drink a coffee and it helps somewhat.
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BlueMeanie
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Re: shadow language
« Reply #8 on: Oct 10th, 2005, 6:41pm » |
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on Oct 10th, 2005, 1:14pm, andrewhurt wrote:| I'm getting ready to survey a group of 140 cluster headache people who were treated by my boss. |
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WOW... where did you find those 140 clusterheads ? We can barely find 140 people here at CH.com and OUCH. I hope your going to let them know about this site as well as the OUCH website.
As far as shadows, it's kinda like you have to be a seasoned Clusterhead to fully understand the feeling. It's a mild pain, usually around the eye and temple area. It's whens you start to rub the back of your neck, put pressure on your temple and cock your head slightly and wait it out. It lets you know that the BIG ONE is coming at any time. If you have abortives, it's time to have them out and ready to go for win the BIG ONE arrives. I guess if you look at the KIP scale to the left of this page, a shadow can be classified as a KIP 3 and less.
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Barry_T_Coles
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Re: shadow language
« Reply #9 on: Oct 10th, 2005, 7:02pm » |
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Iv'e been looking around for a description of shadows as I think thats what I may be going through now.
The big hits finnished in February but I have had these things hanging around ever since.
Constant pressure in the CH area from the neck around to the eye( left side for me ).
Occasional sharp stabs going from the back of the neck to the centre of my head but lasting only a few seconds.
Constant stiffness in the neck with a creaking sensation in the muscles and tendons.
I am not saying these are shadows as I am still trying to find out what they really are but having read what has been written above it leads me to think they probably are.
I get to see a Nuro next month, I may know more then.
Kind Regards
Barry
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| « Last Edit: Oct 12th, 2005, 9:16pm by Barry_T_Coles » |
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AussieBrian
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Re: shadow language
« Reply #10 on: Oct 10th, 2005, 7:11pm » |
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If it's any help, I've always called them echoes 'cos that's exactly what they do.
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Kate in Oz
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Re: shadow language
« Reply #11 on: Oct 10th, 2005, 10:38pm » |
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Hi Andrew,
Good luck with the study and I'm sure we'd all be very interested to know how you go with it.
My shadows are much like everyone else has described and they usually occur within a cycle or prior to one starting (episodic). My last cycle seemed unusual in that the shadows remained long after the last hit and I don't recall this happening in the past. (Memory's not too good tho'  )
One feature that I have not noticed here so far is that as well as my temple (ch side) feeling puffy or full I also experience like a cold burning sensation around that area. My scalp is also often very sensative making hair brushing quite uncomfortable. (During a hit my face/head area are incredibly sensative and even just one strand of hair on the face is intolerable!!!)
Again, wish you all the best with the study. Please keep us informed.
Kate
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andrewhurt
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Re: shadow language
« Reply #12 on: Oct 11th, 2005, 11:59am » |
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thanks to everyone for the acute descriptions so far, and please keep them coming.
i had an additional curiosity about the ch shadow. this question would be for anyone who has received surgical treatment for clusters: has surgery effected the "profile" of your shadow, OR, for those who had never previously experienced shadows, did it cause them to come into being? this is a relatively minor point, but if anybody has information on this relationship between surgery (for CH) and shadow i would like to hear about it. thanks again,
andrew
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Sean_C
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on Oct 10th, 2005, 1:50pm, eyes_afire wrote:| You'll probably get a wide range of answers. Probably what most clusterheads will agree on is that it feels like a pressure or fullness in the cluster area. I also throw in some other symptoms and consider them to be shadow activity... because they often foreshadow a full-blown CH. So for me, it is: the pressure, burning eye, extremely stuffy left nose, and eye twitch. |
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I'm an episodic clusterhead and my symptoms are exactly the same except I sometimes will have the watering eye acompany the shadow.
A shadow to me is a symptom of a CH without the actual attack taking place, sometimes lasting for minutes or hours.
Hope that helped.
Sean......................................
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PPRanch
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Re: shadow language
« Reply #14 on: Oct 11th, 2005, 9:49pm » |
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Burning in the same side nostril........."uncomfortable" pressure in the eye and temple.....and a vague, indescribable, "uh-oh" feeling
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don
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Whose your boss?
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maffumatt
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I get "shadows" at the time I would normaly get a hit, I know that they increase in frequency and duration when I am on medication. Generaly for me they include a dull ache in my temple and orbital eye pain. Not severe but enough to know that it is there. For me a shadow takes the place of a hit that I would normaly have, but sometimes they last far longer than a hit. Sometimes up to 4 or 5 hours. It does normaly tell me that my night time hits are going to me worse. Thankss for your interest.
Matt
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Squanto
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Re: shadow language
« Reply #17 on: Oct 12th, 2005, 5:35am » |
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I've had a problem with the term "Shadows." As you can see from the responses to your question(s), quantifying this phenomena is a very personal thing. To me the word "shadow" seems benign and doesn't embody the anxiety and sense of dread that's seems to be a common thread in the answers you've gotten so far. Dread is a big part of it for me. I haven't come up with a better word. Since "shadow" is so commonly used in our community, it's not likely any another word I use is going to change the vernacular.
When I'm experiencing "shadows" and some one asks, "Are you in pain?" I can ony mutter, "No, but I'm afraid I'm gonna be!" For me, the anxiety is like hearing on the TV that there's a tornado warning in your area. And then hearing the rumble of thunder getting closer.
The anticipation that something bad might be about to happen ( and in one's past experience it's happened before) takes what a non-sufferer might consider as a "no big deal" sensation to a whole new level.
I've never been tortured (as in the Gestapo mode) but when I see a movie or TV thing where someone has is being tortured and the bad guy gives the victim a rest and then starts back towards him with the electrical clips or the knife or whatever, I feel an incredible sense of empathy for the victim's horror at what he fears is coming next.
This is not to say when I'm having "shadows" I'm a quivering mass of jelly on the floor - but the little boy inside me wishs there was someplace to hide and excape what might come next.
Squanto
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don
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Does anybody know who he works for?
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AussieBrian
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Re: shadow language
« Reply #19 on: Oct 12th, 2005, 6:42am » |
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Ah, Squanto, how I empathise. All these years and I still wonder which is worse - the pain when it's happening or the fear when it's not.
It's like putting your hands in your pockets and trying to decribe a spiral staircase. I've never eaten roasted punkin seeds so please tell me what they taste like.
Still, it looks like the bloke is trying to help so I reckon we give him the time day, but I'm with you on this one.
Unquantifiably yours,
Brian Down Under.
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don
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For all I know the bloke is doing research for world renowned headache specialist Dr. Ali Sultan.
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AussieBrian
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Re: shadow language
« Reply #21 on: Oct 12th, 2005, 7:52am » |
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on Oct 12th, 2005, 6:51am, don wrote:| the bloke is doing research for world renowned headache specialist Dr. Ali Sultan. |
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As I recall, he was scheduled for hypothalamus surgery Thursday two weeks ago and we haven't heard from him since.
Perhaps it was DIY.
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Jeepgun
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Re: shadow language
« Reply #22 on: Oct 12th, 2005, 8:36am » |
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Phil L
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Re: shadow language
« Reply #23 on: Oct 12th, 2005, 6:17pm » |
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Once again I must thank all of you for helping me to understand what is going on in my own head (or eye, as it were) and the term 'shadow' for the mild pressure and kip 2-3 that goes along with it, makes perfect sense. Now, to get my Doc up to speed.............
Phil L
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BobG
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Re: shadow language
« Reply #24 on: Oct 12th, 2005, 9:02pm » |
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on Oct 10th, 2005, 1:14pm, andrewhurt wrote: How do you know it is a "shadow" and not a headache?
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A "shadow" IS a clusterheadache. Just low on the Kip scale.
Now please answer Don's question.
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